Adrenaline Overload, Had Massive Attack Today, Can Anyone Relate? Story Inside

[Guest GaryRN]

One of the reasons I'm looking for a chat room, is for live conversation and support. Even though in my case it is Lyme, I now have POTS as part of my Lyme.

Woke up this morning very nauseated out of bed. Had a bagel and cream cheese just to get some food in me. Nausea persisted. While treating my Lyme, I get this from time to time as the toxin die off from the bacteria causes all sorts of symptoms. Usually, I do some coffee enemas to detox, and this helps with the Nausea for most Lyme patients.

Well today, I decided to just do a tap water enema, and it appeared to have helped with my nausea.

Not even an hour later, I felt like I was on overdrive. I took 0.5mg of Xanax with no success, then took 50mg of Benadryl, again with no success. My mind was racing and couldn't think clearly and my anxiety was going through the roof. Next thing I know, I'm getting scared to death, as people get with panic attacks, yet I wasn't having a panic attack, at least in the sense of sweaty palms, racing heart, etc. It was more of just a very high level of anxiety that was probably inches away from being a panic attack and I called a friend on the phone to help calm me down.

During the conversation, I began to cry. The crying isn't real in the sense of true depression, but more of just being scared and tired of not being able to function like I once did. Even though I have seen great progress in treating my Lyme, the POTS adds to the entire equation.

I don't ever remember having such an attack since all this began. I did increase on my treatments 2 days ago and perhaps this is to blame, but nevertheless, I just couldn't sit still, couldn't think straight, and felt very weak in the legs.

I finally did calm down after about 3 hours of this, but I must say it was freaking me out. The meds would normally knock me out with the doses I was taking, but they seemed to have very little if any effect while all of this was going on. It just felt like pure adrenalin and the only thing keeping my Heart Rate down was the high dose metoprolol.

I went to my wife, who is NOT a big supporter of invisible illnesses, and all I was asking for was for her to help settle me down. Well instead, she started telling me things I didn't want to hear and that I already know. So, this increase in stress began to amplify the entire situation by 2 at least. I quickly got away from her, took another 50mg of Benadryl 2 hours into this ordeal and finally began to settle down. I am settled now, and started to feel fatigued, but the fatigue went away quickly and I'm still a bit revved up.

I imagine I will sleep like a baby tonight as my adrenals are probably shot for the day, but just wondering if anyone else out there gets this.

A chat room would be great for POTS. I hope there is one out there full of people.

Appreciate any responses. Although, I'm good at giving advice, I need some too every once in a while and like to feel I'm not alone in all of this.

TC,

Gary

[juliegee]

Hi Gary,

I'm really sorry for all that you are going through. I know exactly what it's like to feel that "out of control" physically. It's really, really scary. I get the feeling that you don't want to her what I have to say but I feel compelled to repeat myself one more time. I'm worried that you are really experiencing an allergic reaction/anaphylaxis as opposed to a panic attack. The fact that BENADRYL is repeatedly what settles things down is a very telling symptom. My last post to you may have been lost.....so I'm re-printing it:

"I belong to several forums for folks suffering with MCAD and mastocytosis. ANXIETY is often one of the first symptoms. As our bodies go into anaphylaxis (even chronic low grade anaphylaxis) our blood vessels leak, causing irratic low BP and fast HR, and lots of adrenalin to counteract everything. The inexplicable adrenalin is what causes the anxiety.

I am not suggesting that you don't have a lyme infection, but you are classic for MCAD too. Stresses can set this off too. Don't discount this theory too quickly."

How long have you been on a beta blocker? Folks with allergies/asthma/mast cell issues often have a worsening of symptoms with a beta blocker- I did. They can also prevent an epi-pen from working appropriately should that become necessary. I had to repeat mine twice (one at home, one at the ER) while on a beta blocker. Your lyme treatment could also be precipitating the allergic reactions. I often do fine with an antibiotic, then slowly over time build up an allergic reaction to it.

I won't bother you again with my theory. In the meantime, I'll keep you in my thoughts and prayers. While i was trying to sort out all of my autonomic/mast cell issues.....I had many episodes like you describe. My heart breaks for you.

All the best-

Julie

[icesktr189]

i can so relate to you..

i felt just like you did yesterday.. so out sprung that i feel like my skin is crawling. There is basically no calming down when i feel like that. i just have to wait for that feeling to pass. Some days im so tired i cant lift my head then other days im like that where i feel wired out and crazy. I know what triggers it though. When i dont get enough sleep, or too much caffiene really plays a roll in that feeling. I used to think they were panic attacks, but i know its POTS. I was diagnosed with secondary anxiety disorder. When i get that feeling i actually do have a panic attack because its such a scary feeling. BUT i know that if i did not have POTS i would in no way have any anxiety.

i take klonopin when i feel that that..

good luck

[Radha]

i feel almost exactly this way every time i eat anything, and even just a small amount! the whole episode takes hours to go away and leaves me so so

physically drained and bruised and very mentally drained too, wish i had some helpful advice, just that i know exactly what you are talking about and i hope

you can at least get some support and understanding from your wife, wish you relief

radha

[Ernie]

Hi,

You can PM me if you want to talk.

[carinara]

i know exactly what you mean. During my bad POTS episodes in 2000, 2004 and 2007 (when i was bedridden), i often experienced these kinds of episodes. They scare the living day light out of me. It felt like my body reacts to every little thing 1000 times more than usual and there is no way to stop it. All i could do was wait these situations out. Back then i didnt know i had POTS, so not knowing what this was scared me even more, it always felt like dying. I hope that i will never get in such a state healthwise, but if i do, i will definately get tested for MCAD.

[mjan]

I am sooo sorry for ALL you are going through. And I know about the "invisible illness" misunderstanding. My husband who was usually very considerate just could not get my limitations.

BUT.. that "panicky" feeling and behaving IS a part of this. It reminds me of a super jet sitting on a run away.. revving up its engines higher and higher but NOT going anywhere. AND..the CRYING.. yes yes yes.. CAN RELATE.

Last time I went to the ER (cuz my bp and symptoms were off the roof).. I had to talk really really fast.. (I would anyway with thise surge) and then started crying. I remember telling the nurse as I pointed to my tears.. this is an autonomic response.. the crying is just part of it. The RN looked at me sympathetically but not positive if she really got what I was trying to tell her.

After my "attack" was over.. and I crashed.. with not enough energy to even lift my head up.. I told her softly.. this too is part of these attacks..thanks but no thanks.. I can rest at home. I paid my ER copay and left.

At least the ER MD understood. She was ready for BP emergency..but listened to me. NO tortuous tests or assessments.. she waited it out as I asked her to..ready to intervene. Actually she said if she HAD intervened my BP would've bottomed out..too dangerous.

PM me anytime too. We're ALL here for YOU!!

But..what do you do to treat Lyme disease??

Warmly,

Jan

[Guest GaryRN]

I feel so stupid................ How could I have overlooked this ?

I only figured this out this morning folks, but I think part of this for me has to do with the fact that I have been weaning off Tramadol (a narcotic like mediciine), but not a true narcotic. It has similar properties as it occupies the opiate recepotors by way of the mu.

I was taking 50mg three times per day. I cut out the mid day dose and then cut the morning dose by 25mg and then the pm dose, etc. etc. until completely off.

I must have done this too quick, as I do believe some of what I was experiencing was in line with "Akathesia".

I took 50mg this morning and have settled down some. Still very shaky and a residual headache.

This would account why the Benadryl was helping, as Benadryl is the treatment for Akathesia.

I hope I got this right, otherwise, I don't know what it is. I should know for sure in about 24 hours as my body readjusts back on the medicine.

Gary

[janiedelite]

Don't feel stupid. My hubby was on Tramadol 50mg twice a day after a car accident and he tried to wean over a month but could hardly function, and he doesn't have POTS! He went back to the prescribing doc who put him on Nortryptyline and felt better within just a few days. He was weaned off the nortryptyline a couple months later. Good luck!

[Maxine]

I'm so sorry you had to experience one of those "attacks". I hate them, and feel this is the most disturbing thing in my illness that I experience. Right now my ANS seems to be calmed, but I also deal with extremely low BP, lathargic, very fatigued, and want to sleeep a lot.

When I crashed in the beginning with my POTS I felt out of body, my heart rate never calmed, and I was so freaked out because I was on beta blockers (propranolol). I had been on beta blockers since 1990, but was not diagnosed with POTs until 2001. At the time it was thought I had MVP, but in the mid 90s I was told no MVP. I had some of these attacked in the early 80s soon after my son was born also, but I was given phenobarbitol. It worked very well, like nothing ever happened, and I weaned off them in about 6 months. I actually think they worked long term, because I didn't need anything for over 7 years. In 1990 I was working for a uniform rental/laundry compnay in accts. receivable, and later in management. !n 1990 the company was busted by EPA for making the folks living behind the bldg. sick. The fumes were overwhelming, and I had a bad spell in Aug. 1990, but it only lasted about 3 months---kind of CFS type symptoms, but mild. However, the tachycardia wasn't, and I was never able to get off beta blockers or the tachy came right back with a vengence.

The company was ordered to handle all shop towels, and anything else with ink solvents, ink toxins, or any other kind of toxic chemicals to be laundered in the Cleveland Facility. For several years, from late 1990 to 2000 I was able to function fairly normal but had to be on beta blockers. I didn't have fatigue, anxiety, panic ect. In Dec. 2000 I crashed hard, and this is when I had severe panic attack like symptoms. When I went to the ER with tachycardia that my BBs wouldn't control, one nurse blamed the hot fudge sunday I ate---lol. I had just had a tooth pulled that afternoon, and had a terrible spell that night. I don't know if it was related or not, but a couple of doctors thought it was basically the straw that broke the camel's back. I had been sick for years, but it was mild and tolerable. A couple of doctors said I compensated for it, and found ways to work around my illness. At one point when all the testing was being done they had found high levels of lead. The neurologist that was working with me at the time sounded really alarmed when he called me to tell me the news. This was found in my urine. They ran another test for heavy metals, but this time they did blood work, and found normal levels. Then the neurologist said he couldn't help me, and I collapsed in tears, as I had thought we found what was wrong with me. I crashed in Dec. 2000, and it took until June of 2001 to find out I had POTS. Then an MRI was done, and we found I had herniated disks.

After this I went to a Chicago surgeon because he was familiar with ANS dysfunction, and I wanted someone who familiar with the complications that can happen during surgery on POTS/dysautonomia patients. When I went there further testing was done, and he found pressure on brain stem from right vertebral artery, and two severely herniated disks, small posterior fossa, and congenital cervical spine stenosis. He did surgery on the herniated disks, and as time went on I ended up with more problems. I eventually found out I had instability in the occipital region (c1-c2) of my neck, and instability in other areas in my spine. After seeing other doctors, and having those issues dismissed I decided to go see a couple doctors in NY family with chiari related conditions/cervical/cranial instability. They confirmed the instability due to the pannus growth on the odontoid bone, and later another surgeon confirmed it. I was also diagnosed with EDS (ehlers danlos syndrome), classical type. In the END, I found that this is the cause for everything. Everything is secondary to the EDS. My vascular tone is poor, and this could explain why I'm super sensitive to chemical, and also the blood pooling, and severe OI, (orthostatic intolerance)----very low BPs.

I think POTS is a symptom of other primary problems in some people. The severe adrenaline attacks are a way that our body tells us something isn't right, and it tries to compensate. Now that I understand this more, they attacks aren't had scary as they used to be. They are still very unsettling, and I hate them more then anything------------and most of the time I cry if I get a bad one. They just make you feel out of body. Sorry for such a long post, but as you can see there can be so many different causes for ANS dysfunction. Lyme disease being one of them.

I remember them giving me ativan when the attacks hit again in 2000, and this made me feel more "out of body".

When I had my cardiac loop recorder inserted in July of 2005 I had a really bad spell. I blame it on the lidocaine. I couldn't believe it because Epi wasn't used. The attack was so bad I couldn't even talk without sounding like an idiot. I felt like I wanted to climb out of my own skin. This lasted for several hours, and finally calmed about 3:00am. The procedure was around noon. No sedation was used----just the lidocaine. I was told by my EDS doctor that it's possible I had a "toxic" reaction to the lidocaine, and it's possible my vascular system took up the lidocaine too quickly and caused a toxic reaction, because my vascular tone is poor.

One thing that works-----------------------Remember to breathe. Nothing fancy, no deep breathing--------------JUST REMEMBER TO BREATHE. Breathe like a baby does when they sleep. When these attacks happen we sometimes hold out breath not realizing it--------this only compounds the problem. I found how nicely this worked when I used to go visit my best friend in the nursing home. She had MS, and I was newly diagnosed with POTS, and scared to see her like that fearing it would cause my attacks to rear their ugly head. I remembered to breathe-------------It worked!

Right now klonopin works well when I feel like my body might try to go in that direction, and I think it works long term like the phenobarb did. I've also had a baby dose of 100mg SR wellbutrin added in 2001 which helps the blood vessels constrict. I think the combination of propranolol, welbutrin, and klonopin works fairly well, but still struggle with OI. I can't take the florinef due to partially blocked CSF flow and the bulging vertebral artery making up for the missing left vertebral artery. I can't risk a BP spike----especially with the poor vascular tone from the EDS. You know what could happen there with the combination.

Take care of yourself, and feel free to PM me also-----------i'm an old war horse with some of this. unfortunately I don't know much about lyme though. I have read about it, and find it pretty interesting though. Excuse the typos and bad spelling------i;m too lazy to do all the edits----

Maxine :0)

[morgan617]

We have to be very careful when weaning off stuff. But even not weaning off stuff, I used to get those rushes. My BP would double over a period of just a few minutes and my pulse go up, I would feel flushed and my neck would feel like it was engorged, and I'd have neck vein distension. I didn't feel panicked, but I couldn't sit still, like the heebie jeebies sort of. I had to just wait it out and it sucked.

Since I've been on betas, I still have them, but not nearly as bad. They just come out of no where and last about an hour. Oy, I hate them, but I just keep telling myself the body can only be that jacked up for so long, it can't sustain it. I actually have no idea what MCAD is, I'm not sure it was discussed much when I was here all the time. I am assuming it's some kind of mastocytosis?

Gary, I have a friend who's hubby has had Lyme twice. He took six weeks of antibiotics each time and fully recovered. I know that lyme can cause irreversible neuro damage if left unchecked, so was wondering if you knew how long you had it before you got treatment. I guess some doctors give meds for much longer than six weeks, but is that still controversial?

We do not have much of a problem with it where I live. I've had problems my entire life, so can't blame it on lyme. Just curious. Thanks.

Anyway, without Lyme, I have the same surges. morgan

[Rene S.]

Gary, I'm so sorry for what you went through and I shudder since I can relate. For the last 2 weeks my body has been in pure adrenal overdrive. I saw a new endo the other night and he basically dismissed it as "anxiety disorder". Hello??? I know I have anxiety but this has been awful. My b/p is sky high and my pulse has been as well. I'm shaking more than usual and the endo even though my aldosterone levels were low and renin high refused to do further blood work. He kept saying go see a psychiatrist because all of the adrenal will eventually kill you. I asked him to check for a pheo (adrenal tumor) since I have so many symptoms, but he said impossible and dismissed me. It's getting frustrating to say the least.

And I take klonpin which usually works, but it's not touching it now. So who knows? A flare up and I feel awful.

So sorry that you went through this and hope you are doing better now.

Rene

[Guest GaryRN]

I suspect I had Lyme at least 2 years before starting treatment. So you know, your not safe in Washington or anywhere. Lyme is not only an epidemic, but it is pandemic. It doesn't discriminate. It can be transmitted sexually and passed on from mother to child.

Your friends husband more than likely cleared up much of the bacterial load, but not all of it, thus needed to be retreated. He is lucky to have responded to abx as many do not in the latent stages.

Gary